Thursday, December 17, 2009

This FINE Complete Bollards Therapy is specifically aimed at helping those pesky M.E. patients who aberrantly believe they have irritable bladders or bowels.

Those patients who wrongly think that they cannot walk to the beach in time to relieve themselves - the bed bound, housebound, and those inland in places such as Birmingham, should immediately be labeled 'afraid of failure' and refused benefits.

Chalder's Beach Toilet has been thoroughly put through its PACEs as part of a multi million MRC funded study. All penguins in Sub-Sharan Africa studied using it are now back at work.

Wednesday, December 16, 2009

flightlessthey can swimlargest species up to 1.2m tallthey eat mostly fishthey lay 1 or 2 eggsthey generally live in colonies

the 'CDC' definition of these birds is that they are

flightlessthey sometimes eat fishthey lay eggsthey can swim

the 'Oxford' definition is that these birds are:

flightlessthey lay eggs

The 'Oxford' definition was chosen for the research as the others were too difficult to apply. 100 subjects who met the research criteria were studies in Sub-Saharan Africa.

The research found that penguins:

live in desertscannot swimare up to 2.4m tallweigh 200 poundscapable of speeds up to 40mph on landare mostly vegetarian

Conclusion

The research has discovered the truth about penguins. Those funny black and white birds waddling about the ice and swimming in the sea are making fools of everyone. They are not real penguins and should be excluded from further research into penguins

The people were relocated after one guest died and at least two others became sick since October from the disease. An investigation last week by county and state officials revealed that the hotel had installed a water filter that remove chlorine from its city-supplied water which may have allowed bacterial growth.

Saturday, December 12, 2009

It is an established fact that the MRC has a secret file on ME that contains records and correspondence since at least 1988, which, co-incidentally, is about the time that Simon Wessely began to deny the existence of ME. The file is held in the UK Government National Archives at Kew (formerly known as the Public Record Office) and was understood to be closed until 2023, but this closed period has been extended until 2071, at the end of which most people currently suffering from ME will be conveniently dead

As one puzzled ME sufferer recently noted: “why on earth have a 73 year embargo on these documents on an illness where a load of neurotic people, mostly women, wrongly think they are physically ill?” ( http://health.groups.yahoo.com/group/MEActionUK/; 14th October 2009).

Tuesday, December 8, 2009

M.E. can be either epidemic or sporadic, but always is characterized by its acuteonset. M.E. was first called Benign Epidemic Myalgic Encephalomyelitis, benign simplybecause the epidemics were only infrequently associated with patient death. However,deaths did occur.

Deaths were documented in the 1934 Las Angeles, the 1947 Iceland epidemics and the 1955 Cumberland epidemics. Over 60 M.E. epidemics have been described. Benign was soon dropped due to the severe and chronic disability associated with this illness.One important clue as to the CNS injury occurred in the Iceland epidemics circa 1947when three children fell ill and died of Parkinson-like illness. The three children were allyounger than 10 years of age, strongly suggesting that M.E. in the Iceland Akureyriepidemic was associated with an injury of the CNS in the basal ganglia area of the brain.

It has been shown that the normal accelerated antibody response to viral orimmunological invasion is blocked in M.E. with the significantly decrease in number andactivity of NKC (Natural Killer Cells), the primary response to infection. This failure ofthe NKC system allows the viral or immunological pathogen to persist for a sufficientlylong time that this infectious pathogen is recognized as self, not susceptible to the normalhuman antibody response.

This blocking of the normal immune or inflammatoryresponse, allows the pathogen to cause long standing disease of multiple organs,particularly the CNS (Central Nervous System = brain+ spinal cord), muscle, vascularsystems of the body and to a lesser extent various other organs and systems.Not until the 1984 North American epidemics, that continued on up until 1989 in largenumbers, usually peaking during the August to Christmas periods was there physiologicalbrain imaging in place to ascertain brain injury.

It was shown that a significant majority of these epidemic, cluster and sporadic patients had persistent pathophysiological hypoperfusion brain changes that could be measured by brain SPECT and brain PET. D

The Injury to the CNS is not a theory: In M.E. the irregular diffuse attack upon theCNS (central nervous system) can be measured by various techniques first noted by Drs.Jay Goldstein and Ismael Mena in California in 1998. They pathological findings include abnormal persisting changes in:

Zidovudine (INN) or azidothymidine (AZT) (also called ZDV) is a nucleoside analog reverse transcriptase inhibitor (NRTI), a type of antiretroviral drug. It was the first approved treatment for HIV. It is also sold under the names Retrovir and Retrovis, and as an ingredient in Combivir and Trizivir. It is an analog of thymidine.

AZT use was a major breakthrough in AIDS therapy in the 1990s that significantly altered the course of the illness and helped destroy the notion of the 1980s and early 90s that HIV/AIDS was an instant death sentence.

Zidovudine was the first drug approved for the treatment of AIDS and HIV infection. Jerome Horwitz of Barbara Ann Karmanos Cancer Institute and Wayne State University School of Medicine first synthesized AZT in 1964[1][2], under a US National Institutes of Health (NIH) grant. AZT was originally intended as an anticancer drug, but was shelved after it proved insufficiently effective against tumors in mice.[3]

In 1974 W. Ostertag from the Max Planck Institute in Germany provided some evidence that AZT was active in a mouse retrovirus culture system.The time between the first demonstration that AZT was active against HIV in the laboratory and its approval was only 25 months, which is one of the shortest periods of drug development in recent history.

No PI affected XMRV production; even high concentrations of Ritonavir failed to inhibit the maturation of XMRV Gag polyproteins. Among the NRTI, NNRTI and integrase inhibitors used in this study, only AZT blocked XMRV infection and replication through inhibition of viral reverse transcription.

This sensitivity of XMRV to AZT may be explained by the modest homology in the motif D sequences of HIV-1 and XMRV reverse transcriptases. If XMRV becomes established as an etiological agent for prostate cancer or other diseases, AZT may be useful for preventing or treating XMRV infections in humans.

Saturday, December 5, 2009

"The interim report of the All Party Parliamentary Group on ME inquiry into NHS services for people with ME/CFS was launched at the group's meeting in the Commons yesterday (Wednesday 2 December 2009).

In a press statement issued after the meeting, APPG chairman Dr Des Turner MP said the evidence submitted to the group made it clear that the Department of Health (DoH) and the National Health Service (NHS) needs to significantly increase its efforts to ensure that people with ME/CFS get adequate treatment.

Dr Turner said: “Currently, services offered to patients with ME/CFS are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard. This is confounded by delays in diagnosis and failings on the part of general practitioners to recognise the disease or diagnose it."

“We found unacceptable variation in provision between different health trusts which needs to be addressed.”

The parliamentarians said that people with ME/CFS continue to be badly treated by the Department of Work and Pensions (DWP) and find great difficulty in accessing disability benefits.

Friday, December 4, 2009

"On Thursday’s show (12/3), Dr. Oz did a great job introducing the new research showing the presence of XMRV viral infections in CFS (Chronic Fatigue Syndrome). As the earlier show I appeared on focused on general fatigue, I have been encouraging Dr. Oz to do a segment focusing on CFS, and on XMRV in particular, and I think he did an excellent and compassionate job!

The XMRV research has a number of important implications:

1. CFS is validated within the mainstream medical community as a real, physical and devastating illness.

The XMRV virus study clearly documents that CFS is a real and physical illness, again proving that those who abuse patients by implying that the disease is all in their mind are being cruel and unscientific nitwits.

Though the economics may cause a few insurance companies to continue to unethically deny the science, so they can avoid paying for the health care and disability costs they are responsible for, this research should help speed up understanding of the illness. Meanwhile, for those with the illness, their families and their physicians, it is now clear that this is a real and devastating illness!

2. Testing.

Information on doing the XMRV virus blood tests can be found at VIPDX (order the XAND - XMRV screen by PCR with virus culture confirmation: Test Code XAND). The cost is $650, and the profits from the test will help support the Whittemore Peterson Institute (WPI), which sponsored the XMRV study and is playing an outstanding role in CFS advocacy.

The testing will not immediately effect most people’s treatment and it is not clear if insurance will cover it yet, so it is OK for those who can’t afford the testing to wait (you will benefit from others who do the testing and thereby further help us understand the illness). For those who have doctors, insurance companies, or family that are skeptical about their illness, this offers a good reason to do the testing.

Also, it is reasonable to simply do it to see what it shows. Do both tests in the XAND panel though, as one test being negative does not mean the infection is not there. You don’t need the grief of a “false negative” test.

A negative panel does not mean you don’t have the illness, so don’t panic if your test is negative. We’ll discuss test interpretation more over time.

3. XMRV Virus Treatment.

This is where perspective is critical. Although there are a number of antiviral medications for retroviruses (because of AIDS research), we do not know which ones will work against XMRV or in what combination. It will take at least a few years for research to answer this question (and possibly many years). Because of this, it is important that we harness the power of the Internet and the CFS community to begin to answer this question more quickly (which will also help guide future research).

Although I recommend people begin with other proven treatments (see below) while this issue is addressed, knowing the CFS community to have many wonderful cutting edge activists, people will be trying different mixes of anti-retroviral “cocktails” anyway.

If any of you try these, please post your experience with the treatments (include the medication names and doses, how long used, whether or not it worked and side effects) on our End Fatigue community discussion board. I invite you to note this information even when you first start treatment, and update our community occasionally so that we can follow along with you. We would like to hear your experiences whether or not the treatment has helped you.

Meanwhile, there is a lot that you can do NOW to start feeling better.

4. Treatment — What Can I Do NOW?

The good news is that there is a lot you can do now to both feel better and probably suppress the virus. As Dr. Oz noted, about 4% of the healthy population is XMRV positive, and only about 1% have CFS. This means that a healthy immune system can often suppress the virus (only about 20% of those with the virus get sick), which is really good news! Our published placebo controlled study shows that, on a scale of 0 to 10 (with 0 being “dead” and 10 being “perfectly healthy”), the average CFS patient improved from a 3.5 to a 6.2 score at 3 months and to almost a 7 score at 2 years (by which time most people had improved to where they could wean off of most treatments). Treatment was based on our “SHINE Protocol.” (Our free symptom analysis program can determine what treatments will help YOU feel the best, as specific treatments vary quite a bit from person to person.)

Doctors at the Fibromyalgia and Fatigue Centers (FFC) are staying up to date on XMRV testing and treatment, and we are adding the information into our diagnostic and treatment protocols as it becomes available. Our antiviral IV treatments have also been very helpful for many FFC patients over the years.

There is good reason for hope in this new research, and the good news is that there is also a lot that you can do NOW!

Tuesday, December 1, 2009

"The ME Association is continually updating its website information and guidance for people with ME/CFS in relation to swine flu, Tamiflu and swine flu vaccination.

We are also asking for feedback from people who have been given swine flu vaccine. Feedback so far has been limited due to the fact that some doctors do not accept that ME/CFS could be a high priority illness fot vaccination purposes.

Consequently, most of the feedback has been from people who have had the vaccine for employment purposes (eg health service staff) or they have another illness that is clearly in the NHS high priority list (eg asthma).

We have had 16 replies so far.

Overall, most people have reported relatively minor problems with the vaccine. And one person (severe ME) had no problems at all.

One or more 'minor' adverse reactions, in particular local soreness and sometimes swelling at the injection site, have been frequently reported. Other 'minor' adverse reactions include feeling feverish, headaches, nausea and wanting to sleep more than normal. The majority of people have also had what appears to be a temporary exacerbation of their ME/CFS fatigue +/- joint or muscle pain.

However, three people (3/16) have reported a more prolonged and serious exacerbation/relapse of their ME/CFS.

Of particular concern is a single report of a previously fit adolescent who has developed a number of ME/CFS type symptoms four days after his vaccination.

Whilst this link to the vaccination may be pure co-incidence, we do know that ME/CFS can occasionally be triggered by vaccinations, including the normal flu vaccine. This case is being reported to the Medicines and Healthcare products Regulatory Authority (MHRA) by The MEA on the Yellow Card reporting system. And it is very important to make sure that doctors in the UK report all suspected adverse events to swine flu vaccination to the MHRA.

The MEA will continue to monitor the response of people with ME/CFS to swine flu vaccine.

If you have been vaccinated, please let us know what happened afterwards. Email us here."

"Plenty of people are still dying of diseases which other people do not believe." (Dr. M.N.C. Dukes).CBT and GET for ME: "There is no nonsense so gross that society will not, at some time, make a doctrine of it and defend it with every weapon of communal stupidity."

Robertson Davies

THE NICEGUIDELINES BLOG VERSUS THE NICEGUIDELINES

These are NOT the NICEGuidelines. This is "The NICEGUIDELINES BLOG." What are the differences:

The NICE Guidelines are biased publications based on the GOBSART (Good Old Boys Sitting Around a Table) approach.

This Blog however is not only evidence based but also uses critical reading to judge papers and articles. I also use common sense and listen to others. And finally I read both psychiatric and medical evidence and opinions from around the world to come to a conclusion.

I’m not sponsored by anybody or paid by whatever company as seems to be the norm with many psycho people who publish the same article almost on a weekly base.

So if you value an opinion, formed as a result of participating in many ME activities, for example being bed bound for years, you have come to the right BLOG. All these activities have allowed me to form an opinion as a Doctor and as a Patient. And that is important as the voice of the latter is discarded by many including NICE.

If you don’t read this blog, you will miss out on “accredited” medical education. If you do read it, you may actually become a doctor who doesn’t stop thinking or forgets to ask critical questions. Many good things, including satisfied patients are at your command.

So, if you arrived here for the straightforward GOBSART approach, I will disappoint you. If you are interested in forming your own opinion about ME, and other interesting things, read on!

About Dr. Speedy.

I am a Family Physician or GP as it is called in Australia or the UK. I am also an ME patient unfortunately. Bedbound that is. So at the moment I’m in private practice so to speak. I’ve got only one patient, ME, or is it me?

I graduated as a doctor a long time ago, and I am the founder and editor of The NICEGUIDELINES BLOG, an internet based ME BLOG that is devoted to critical reading and cheering you or ME up.

I have the following conflict of interest: I would like to get better and see that the wasting of public money on CBT (talk therapy for a neurological disease, really helpful) and other silly therapies for ME stops, and will be used in better ways.

My goal has always been to help, and if possible, cure patients. With this disease you will soon find out that many psychiatrists and psychologists are only in it to make money and get their name in the spotlight. And what happens to and with the patients is irrelevant.

I stand to benefit both mentally, physically and also financially if this silliness would stop, and I would get my health back, and I can go back to work and have a normal life again. Please evaluate my postings with this in mind! And remember, there are also (lots of) psychiatrists and psychologists who haven’t switched their brain off.